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No, of course I won’t be doing that. Don’t be silly. You haven’t actually presented any evidence that the project would be unsuccessful, or any rationale why completing a questionnaire would cause harm, which is clearly implausible. There is merely a link to a paper which examines the use of two...

Thank you for the clarification. I can understand the distinction you are making and can relate it to my own experience. I will add it to the feedback from other participants. The challenge we face is to to find some wording, or format that accommodates as many people's understanding and...

Im afraid I am not familiar enough with this system to reply each of your replies to my replies to your comments (!), but thanks and they are noted.

I appreciate Andy, and all the forum members' input. My further comments were an attempt to highlight the context and some of the multiple viewpoints and preferences we are trying to juggle, plus to ask for some suggestions and/or further information so that we can make amendments. If I have...

Hi Ash Im trying to understand where you are coming from. What is the principle on which you object to 'these forms'? As I’ve said before the aim of the PASS and the other PROMs in the clinical assessment toolkit is to support the clinical assessment process (as it says on the tin). There has...

thanks for the heads up, we will amend asap.

I don't understand, 'very severe ME' is included. It is covered in level 5. If you feel it isn't covered, please could you suggest what should be included and how? We have deliberately removed the labels as, not unreasonably, people whose life had been turned upside down get fed up with being...

Hi Jonathan The aim of the PASS is to help PwME and clinicians work out what is happening, and give some pointers about how to manage it. It is intended to help people work out the wood from the trees, which can be a big problem, especially early in the illness. We will find out whether it does...

Finding one's baseline is indeed a challenge, and understand that you have not been able to find it or any effective strategies. However, finding the level of activity one can undertake without triggering PEM (ie one's baseline, or energy envelope if you prefer) is the basis of learning how to...

The point of hte survey is a) for people to complete it so we can use the scores to statistically refine the structure of the assessment to ensure it provides accurate data. and b) to get feedback from PwME about it. and how it can be improved. So please add your feedback in the section at the...

Trish, the aim of the assessment is ask abut the main features of PEM, how bad it is, and how it impact son people's lives. So how/why is it a problem to ask about the nature of the triggers and symptom changes, followed by whether it happens immediately or is delayed?

Hi Trish. I am sorry you have found the survey difficult to read. We had toned down the contrast between the text and background because people with visual sensitivities said they found black text on white background too glaring. It looks like we have overdone and will try to find a middle ground

Hello again Andy I can see you are a chap who likes great precision and specificity in the way questions are presneted, which is fair enough, but we are also trying to accommodate people who want a colloquial approach and simple layman's language. I guess we could have said "In the last month...

Hi Andy Im not sure that I understand your problem with Q1, people answer yes if the have 'it', whether they call it ME or CFS. There is nothing to be gained by repeating the endless discussion about whether ME and CFS are the same thing, or not. After much discussion, we opted to refer to 'the...

At the risk of repeating myself, I said that physiological monitoring had a great deal of potential (based on my knowledge of these results and my own use of HR and HRV to monitor PEM) but there was a long to go before it was suitable for use in clinical practice. This study established that it...

Trish - we already have a group who are doing this. All of the research team (ie the co-applicants on the grant) except the statistician have personal experience. They work with me to oversee hte whole research process. The aim of the advisory groups is specifically to inform the the...

Dear All I'm afraid it is beyond my technical skills to work out how to reply individually but to explain why we closed applications to the advisory group.... am advisory group usually has 6-12 members and I thought some extras would be helpful as it is likely that not everyone will be able to...

the aim of the project is not to assess services, it is to work with pwME and clinicians to develop good quality tools to do so.

thank you